Advanced insights in upper limb function of individuals with cervical spinal cord injury

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Inge-Marie Velstra

function of individuals with

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Cover Quirine Velstra

Layout Renate Siebes, Proefschrift.nu Printed by Ridderprint, Ridderkerk

ISBN 978-90-365-3929-6

DOI 10.3990/1.9789036539296

All right reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any means, electronic, photocopying, or otherwise, without permission of the author. The copyright of the articles that have been published, has been referred to the respective journals.

Inge-Marie Velstra

Schweizer Paraplegiker-Zentrum Clinical Trial Unit

Guido A. Zäch Strasse 1 6207 Nottwil

Switzerland

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DISSERTATION

to obtain

the degree of doctor at the University of Twente, on the authority of the rector magnificus,

Prof.dr. H. Brinksma,

on account of the decision of the graduation committee, to be publicly defended on Friday 23 October 2015 at 12:45 by

INGE-MARIE VELSTRA

born on 1 May 1967 at Apeldoorn

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The supervisors and the co-supervisor have approved the PhD thesis/technical design. Supervisors Prof.dr. J.S. Rietman Prof.dr. A. Curt Co-supervisor Dr. M. Bolliger

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Supervisors: Prof.dr. J.S. Rietman

Prof.dr. A. Curt

Co-supervisor: Dr. M. Bolliger

Members: Prof.dr. V. Dietz

Prof.dr. M.W.M. Post

Prof.dr.ir. H.F.J.M. Koopman

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The work presented in this thesis was carried out at the Clinical Trial Unit Nottwil and supported by the Swiss Paraplegic Centre Nottwil.

This thesis was printed with the financial support of the Swiss Paraplegic Centre Nottwil, Roessingh Research and Development, and Orthopartner.

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Chapter 1 Introduction 9 Chapter 2 A systematic literature review of outcome measures for upper

extremity function using the international classification of functioning, disability, and health as reference

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Chapter 3 Changes in strength, sensation and prehension in acute cervical spinal cord injury: European multicenter responsiveness study of the Graded Redefined Assessment of Strength, Sensibility and Prehension (GRASSP)

57

Chapter 4 Epicritic sensation in cervical spinal cord injury: diagnostic gains beyond testing light touch

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Chapter 5 Prediction and stratification of upper limb function and self-care in acute cervical spinal cord injury (SCI) with the Graded Redefined Assessment of Strength, Sensibility and Prehension (GRASSP)

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Chapter 6 Predictive value of upper limb muscles and grasp patterns on functional outcome in cervical spinal cord injury

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Chapter 7 General discussion 147

Summary 163

Samenvatting 169

Danksagungen / Acknowledgements / Dankwoord 175

Curriculum vitae 183

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Spinal cord injury (SCI)

A spinal cord injury (SCI) is a damage or trauma to any part of the spinal cord. This often causes permanent changes in strength, sensation, autonomic functions and other body functions below the level of the injury. The extent of SCI depends on the level and completeness of the lesion. The lesion level is classified using the American Spinal Injury Association’s (ASIA) Impairment Scale (AIS) classification according to the International

Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI)1_{which focusses}

on key muscles and key sensory points. The sensory and motor level are defined as the most caudal spinal levels demonstrating normal sensation for both pin prick (PP) and light touch (LT) and normal key muscle group strength. The neurological level of injury is the most caudal level at which both motor and sensory level are intact. The level of completeness is defined using the AIS. The ISNCSCI differentiates between AIS A, B, C, D and E. A complete SCI implies that there is no function below the level of injury: no sensation and no voluntary movement. Individuals with AIS A or B are categorized as having motor complete lesions and individuals with an AIS C or D are classified as having motor incomplete lesions. Spinal cord injury results in tetraplegia when the lesion is at or above the level of T1 and affects arms, hands, trunk, legs and pelvic organs. Paraplegia is caused by lesions below T1 and the trunk, legs and pelvic organs are affected but the upper limb is intact. Besides the neurological dysfunctions, many secondary problems like urinary tract infections, pulmonary complications, blood pressure disturbances, sexual dysfunction, spasticity or pain may develop. The combination of neurological dysfunction and secondary problems in general results in reduced functioning in activities of daily living (ADLs) and affects an individual’s independence, participation and quality of life.

Epidemiology

Injuries to the spinal cord may either be traumatic (due to motor vehicle accidents, falls or sport/leisure/work related accidents) or non-traumatic (due to spinal canal stenosis, tumors, infections, myelitis or ischemia). In general, traumatic SCIs affect more commonly males than females, although large variations exist concerning the male-female ratio between

different countries.2_{The mean age at injury for traumatic lesions lies between 20 and 40}

in the majority of cases.2-4_{This indicates that individuals with traumatic SCI are relatively}

young when the injury occurs and thus they need specific care for prolonged periods of time which generates larger lifetime costs than other diseases such as stroke. In contrast,

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Introduction

Furthermore in a recent publication,6_{three age peaks were noticed in acute traumatic and}

non-traumatic SCI in Switzerland (e.g. 30–40, 45–55 and 60–75 years).

Nijendijk et al.5_{reported that the incidence rate of traumatic SCI in the Netherlands}

in 2010 was around 11.7 per million population per year. The crude annual incidence rate of traumatic SCI in Switzerland between 2005–2011 was estimated at 18 per million

population.7_{The worldwide annual incidence of traumatic SCI ranged from 8 to 49}

persons per million population.2_{Although incidence rates vary widely across countries,}

the incidence of SCI is relatively low compared with other conditions, which is a challenge for the recruitment of suitable participants for clinical studies.

Evaluation of upper limb function in cervical SCI

The upper limbs play an essential role in people’s lifes, because they are fundamental for performing ADLs such as self-care, various types of work, leisure and social activities. Individuals with cervical SCI suffer from motor and sensory impairments which cause limited

upper limb function and effect the performance of ADLs.8_{This ultimately leads to impaired}

independence9_{and restricted participation as well as decreased quality of life. Indeed,}

previous studies have shown that individuals with tetraplegia consider improvements in upper limb function to be one of the most significant factors in improving their quality of

life.10-12_{Several upper limb outcome measures are available. However, only a few have}

been specifically developed for SCI and these have limited psychometric properties.13-15

Therefore, there is a clear need for valid, reliable and responsive outcome measures in cervical SCI, in order to assess upper limb function accurately.

The ISNCSCI1_{is the current standard for evaluating the neurologic status and the}

recovery after SCI and includes the AIS. The AIS classifies individuals with SCI in wide-ranging categories and comprises a highly heterogeneous population in terms of level

and severity of the injury with respect to the whole body.16_{Thus, the ISNCSCI was not}

designed to be specific to the upper limb function which undermines the effectiveness of the AIS in the assessment of upper limb neurological recovery.

The Spinal Cord Independence Measure (SCIM) is the most widely used outcome measure to assess independence in fundamental daily activities and is useful to document

changes in ADLs in individuals with SCI.17_{The utilization of a global outcome measure}

such as the SCIM, although providing clinically meaningful categorization of functioning in ADLs, does not provide insights into the underlying sensorimotor function driving functional recovery. Accordingly, the SCIM is not suitable to discern functional improvement arising

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from actual healing of damaged spinal cord tissue versus rehabilitation training, mood factors and whether the performed tasks are performed bimanually or with compensatory

movements, given the SCIM’s focus on gained independence.17

Likewise, assessments such as the Tetraplegia Hand Activity Measure (THAQ),18_the

Van Lieshout test (VLT)19, 20_{and the Capability of Upper Extremity Test (CUE)}21,22_provide

important information regarding the overall arm and hand usage. They are not designed to provide detailed and reliable information about changes in specific sensory and motor impairments affecting upper limb function. Also assessments like the Grasp Release Test

(GRT)23_{and the Motor Capacity Scale(MCS)}24,25_{are specifically designed to assess the}

effect of neuroprosthetic interventions or upper limb surgery and have not been adopted universally. Furthermore, they do not provide information how changes in impairment contribute to complex upper limb functional tasks.

Moreover, as a result of a wide range of recovery26,27_{after cervical SCI and the state}

of upper limb restoration research in SCI, it is of paramount importance to evaluate upper limb function in cervical SCI comprehensively. The widely used International Classification

of Functioning, Disability and Health (ICF)28_{provides a useful framework to improve the}

appreciation of clinical recovery.

Considering the aforementioned limitations, the Graded Redefined Assessment of Strength, Sensibility and Prehension (GRASSP) was developed as a clinical outcome measure specific to upper limb function in cervical SCI. The items of the GRASSP were generated from existing tests and measures which were reviewed by researchers and

clinicians to determine suitability. The initial GRASSP29_{combined parts of the preexisting}

Link Hand Function Test30_{(LiHFT) which is a modification of the Sollerman Hand Function}

Test31_{(SHFT), the Tetraplegia Hand Measure (THM) and sensory testing instruments for}

peripheral hand injury.32_{It incorporated three domains: strength, sensibility and prehension,}

which is the basis for the name of the measure. GRASSP – strength is assessed using manual muscle testing (MMT) of 10 muscles of both upper limbs (3 in the arm, 7 in the hand). GRASSP – sensibility is assessed with the pocket version of the Semmes and Weinstein monofilament (SWM) at 3 dorsal and palmar sensory test locations of each hand. GRASSP – qualitative grasping (QlG) assesses three predefined grasp forms (cylindrical grasp, lateral key pinch, and tip-to-tip pinch) in both hands and does not require the ability to actually grasp an object. Quantitative grasping (QtG) assesses 6 prehension tasks (e.g. grasping or moving a coin) in a standardised way for each arm separately. Each domain can be tested individually or in conjunction with another domain. Therefore, the GRASSP

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Introduction

covers different aspects of upper limb function for evaluating changes within the motor

and sensory systems. Furthermore, it reflects impairment changes that fall into the ICF28

component “body structure and body function”. These changes contribute to complex upper limb tasks, which refer to the ICF component “activity and participation”.

In individuals with chronic cervical SCI (i.e. more than 6 months post injury), the

GRASSP has shown high validity and excellent overall inter- and intra-rater reliability.33_An

important criterion for a clinical outcome measure, such as the GRASSP, is its sensitivity

to detect changes in upper limb function over time.34-37_{This facilitates the evaluation of}

recovery patterns and treatment efficacy of experimental interventions in cervical SCI. The use of the GRASSP is recommended in the very early acute phases after injury to approximately one year post injury. However, responsiveness has not yet been investigated and is therefore one of the aims within this thesis. In general, little has been published on

prediction of functional outcome following SCI,38-40_{and in particular, data on prediction and}

stratification of upper limb function and self-care after incomplete cervical SCI is lacking.41

Aims

The overall aim of this PhD thesis is therefore to study the assessment, evaluation and prediction of upper limb function up to one year post injury using the GRASSP in individuals with cervical SCI.

The specific aims of this thesis are:

a. To provide information regarding the (1) responsiveness and reliability of different outcome measures used with persons who have impairments in upper extremity function and (2) their content validity based on the International Classification of Functioning, Disability, and Health (ICF).

b. To investigate the internal and external responsiveness and recovery

profiles of the GRASSP instrument in revealing changes in upper limb function within the first year following cervical SCI.

c. To compare the epicritic sensation assessed by Ligth Touch (LT),

Semmes-Weinstein monofilament (SWM), and electrical perception threshold (EPT) across cervical dermatomes (C3-C8) in individuals with cervical SCI.

d. To evaluate the value of GRASSP in predicting upper limb function and

self-care outcomes in individuals with cervical SCI.

e. To determine which single or combined upper limb muscles as defined

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best predict upper limb function and independence in ADLs, and to assess the predictive value of qualitative grasp movements (QlG) on upper limb function in individuals with acute tetraplegia.

Outline of this thesis

This thesis contains five papers, which were originally written as separate manuscripts and presented as chapters in logical order. Below, a brief description of the content of these chapters is given.

First, chapter 2 reports the results of a systematic literature review on current outcome measures regarding upper limb function in individuals with (1) peripheral upper extremity conditions, (2) rheumatologic diseases, (3) stroke, and (4) tetraplegia. All outcome measures have been classified according to the ICF. For each outcome measure a description of the concept, operationalisation into variables and instruments as well as psychometric properties was given to determine the availability of preferably objective upper limb function outcome measures within each health condition that are relevant for research and rehabilitation.

Chapter 3 focuses on responsiveness and recovery profiles of the GRASSP in a longitudinal multi-center study. While it was shown that the GRASSP is a valid and reliable

measure of upper limb function cross-sectionally, its responsiveness34-37_{was still unknown.}

Measures that are valid cross-sectionally are not necessary responsive.42_{The GRASSP}

should be able to determine subtle neurological changes in the upper limb and provide information concerning the rehabilitation progress, in order to be able to evaluate the efficacy of rehabilitation and experimental interventions. Therefore, it should be sensitive to detect changes in upper limb function up to 1 year after cervical SCI. In addition, the responsiveness of GRASSP subtests is compared to other clinical outcome measures as well as to a clinician-rated outcome measure (CROM) in order to explore clinical relevance.

Chapter 4 addresses the comparison of epicritic sensation assessed by Light Touch (LT), Semmes-Weinstein monofilament (SWM) and electrical perception threshold (EPT) across cervical dermatomes (C3-C8) in individuals with cervical SCI. The LT assessment of sensation roughly grades the ability of detecting a light touch in the affected dermatome by “absent”, “impaired”, or “normal”. It was not yet known, if the segmental assessment of epicritic sensation in cervical SCI can be improved by additional semiquantitative sensory measures like the SWM and EPT complementary to LT. These findings are required to evaluate, if LT testing is sensitive enough in interventional studies.

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Introduction

Chapter 5 presents a study on the prediction of upper limb function and self-care following cervical SCI within 1 year of injury. After cervical SCI, arm and hand function outcomes vary significantly and are not only dependent on the level and completeness of the lesion but also on the degree of recovery, motivation, and performance of the

individual. This inherent heterogeneity within individuals following cervical SCI25,26_renders

early prediction of upper limb function and self-care challenging.43_{A thorough and}

adequate clinical assessment of upper limb function in cervical SCI is important to predict potential functional outcome after rehabilitation. In this longitudinal multi-center cohort study, outcome of upper limb function and self-care measured by subtests of GRASSP and SCIM and predicted by subtests of GRASSP, ISNCSCI and SCIM, is described in individuals with cervical SCI. Chapter 6 describes the influence of individual muscles or muscle groups defined by GRASSP and ISNCSCI on the prediction of upper limb function and ADLs. Furthermore, the effect of specific grasp patterns, described in the GRASSP, on the prediction of upper limb function in individuals with acute tetraplegia is identified.

The last chapter, chapter 7, provides a general discussion and reflects on the findings from the various studies. Conclusions are translated into clinical implications and methodological considerations as well as recommendations for future research are formulated.

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A systematic literature review of

outcome measures for upper extremity

function using the international

classification of functioning, disability,

and health as reference

Inge-Marie Velstra

Carolina S. Ballert

Alarcos Cieza

PM&R 2011;3(9):846-860

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Abstract

Objective: To provide information regarding the (1) responsiveness and reliability of different outcome measures used with persons who have impairments in upper extremity function and (2) their content validity based on the International Classification of Functioning, Disability, and Health (ICF).

Data sources: MEDLINE, CINAHL, PsycINFO, and EMBASE databases were

systematically searched for studies on outcome measures used to evaluate upper extremity function; only studies written in English and published between July 1997 and July 2010 were considered.

Study selection: One investigator reviewed titles and abstracts of the identified studies to determine whether the studies met predefined eligibility criteria (e.g., study design, age < 18 years). Another investigator did the same for 70% of the studies.

Data extraction: All types of outcome measures in the included studies were extracted, and the information retrieved from these outcome measures was linked to the ICF by 2 independent investigators who used standardized linking rules. In addition, studies reporting the clinical responsiveness, interrater reliability, and test-retest reliability of the outcome measures were identified.

Data synthesis: From among the 894 studies that were included in this review, 17 most frequently used outcome measures in the different study populations were identified. Five were patient-reported outcome measures and 12 were clinical outcome measures. The outcome measures show large variability with regard to the areas of functioning and disability addressed. Reliability and responsiveness data are missing for a few outcome measures or for certain populations for which they have been used.

Conclusion: This systematic review provides an overview of the outcome measures used to address functioning and disability as they are related to the upper extremity. The results of this study may help clinicians and researchers select the most appropriate outcome measure for their clinical population or research question according to ICF-based content validity, and additional information on the reliability and responsiveness of the measures is provided. Our findings also can provide directions for further research.

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Systematic review of upper extremity function

Introduction

The upper extremities play an essential role in people’s lives because they are integral to performing activities of daily living such as self-care, various types of work, leisure, and social activities. Impairment of the upper extremity can affect other body functions such as

sleep or emotional functions1-4_{and can influence the individual’s experience of autonomy}

and independence.3,5-7_{Impairment of an upper extremity (e.g., finger amputations or carpal}

tunnel syndrome) is not only related to peripheral upper extremity conditions but also to other health conditions, such as rheumatologic diseases (e.g., rheumatoid arthritis), stroke, and tetraplegia.

Other investigators report that approximately 70–80% of persons with stroke have

upper extremity impairment8_{and that more than 75% of persons with rheumatoid arthritis}9

show impairments in body functions and limitations in activities associated with upper extremity function. In addition, restoration of upper extremity function is reported to be a

major priority for people with tetraplegia.10,11

Considering the significant consequences that result from upper extremity

impair-ments,3,4,12-15_{efforts during the last 2 decades have focused on developing condition-specific}

outcome measures to assess bodily impairments, activity limitations, and participation restrictions. With the exception of the tetraplegic population, for which few outcome

measures specific to upper extremity function have been applied,16_{a proliferation of}

outcome measures has been seen in the fields of peripheral upper extremity conditions,17-20

rheumatologic diseases17,18_{and stroke.}21

Thus it is worthwhile to study the areas of functioning, disability, and health that are addressed by different outcome measures that focus on the upper extremity. A comparative examination would allow researchers and health professionals to select the best outcome measure to address the impairments and needs of a specific population in research or

practice. The International Classification of Functioning, Disability, and Health (ICF)22_is

a useful tool for performing such a comparison.23_{The ICF provides a comprehensive}

framework for classifying and describing functioning, disability, and health in people with various types of diseases or conditions. The ICF is composed of 4 components—Body Functions, Body Structures, Activities and Participation, and Environmental Factors—that are organized into a hierarchical structure (Figure 2.1). Chapters are related to each

component, and each chapter is divided into different levels of categories.23,24_{For example,}

the third-level ICF category “d4452 Reaching” is one element of the second-level category “d 445 Hand and Arm Use”, which in turn is an element of the chapter “d4 Mobility”, which is part of the ICF component “d Activities and Participation”.

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An ICF-based comparison also enables the selection of outcome measures that best address the functioning domain in relation to an intervention, which may be at the level of Body Function or Structure, Activities and Participation, or the Environment. Thus the objective of this literature review is to provide an overview of different outcome measures used to address functioning and disability by focusing on persons with impairments in upper extremity function. Our specific aims are to (1) identify outcome measures that address functioning and disability in studies that involve persons with impairments in upper extremity function; (2) compare the content of the identified outcome measures with the ICF as a reference; and (3) report the reliability and responsiveness data of the identified outcome measures when these data are available.

Reliability means “repeatability” or “consistency”. An outcome measure can be considered reliable if it provides the same result with repeated applications. Interrater reliability is used to assess the degree to which different raters are consistent on ratings with the same outcome measure. The test-retest reliability is used to find the consistency of a measure over time. Responsiveness describes the ability of an outcome measure to

detect clinically important change.25

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Methods Study design

A systematic review encompassing 3 steps was performed. The first step was selection of studies. The second step was identification of outcome measures and extraction of information on the reliability and responsiveness of the extracted outcome measures. The third step was linkage of the information contained within the outcome measures to the corresponding categories of the ICF.

Search strategy and eligibility criteria

In step 1, the MEDLINE, CINAHL, PsycINFO, and EMBASE databases were used to select interventional and observational studies. We selected studies published from July 1997 to July 2010 and used specific terms related to upper extremity function, such as “hand”, “arm”, “upper extremity”, “function”, “activity”, “activities”, “performance”, or “skill”. The Boolean operator AND was used to combine these terms with the following terms: “assessment”, “measure”, “measurement”, “instrument”, “test”, “evaluation”, “questionnaire”, “interview”, or “outcome”. The following exclusion criteria were used: nonhuman population, language other than English, patient age < 18 years, review or meta-analysis, case report/case series, phase 1 or 2 study, ecological study, economic-evaluation study or decision analysis, comment, letter, editorial, guideline, conference report, book chapter, or dissertation. An initial search was developed for Medline, and this search was then adapted to the other 3 databases.

We checked the abstracts by applying the same general and specific eligibility criteria. Study populations with no impairment in upper extremity function and studies with a sample size < 10 were excluded. The full text was ordered for selected studies, and the same criteria were used to review the text. Studies that did not provide any reference or information about the psychometric properties of any of the outcome measures used also were excluded.

Data extraction procedure

In step 2, outcome measure extraction, all types of outcome measures with a reference or information about psychometric properties were extracted. Outcome measures included were categorized according to the study population for which they were used. The following groups were differentiated: (1) peripheral upper extremity conditions, (2) rheumatologic diseases, (3) stroke, and (4) tetraplegia, all of which affect the upper extremity. Because the number of retrieved outcome measures turned out to be very large, the 5 (arbitrary)

(28)

most frequently used outcome measures in each of the study populations were selected for further analysis (Figure 2.2).

In our study the selected outcome measures were categorized into 2 different types of measures: (1) patient-reported outcome measures and (2) clinical outcome measures observed or rated by health professionals. Patient-reported outcome measures contained items reported by the patients or proxy respondents, such as “Are you able to shampoo

your hair?” from the Health Assessment Questionnaire (HAQ).26_{Clinical outcome measures}

observed or rated by health professionals contained items such as “Wash/dry upper body”

from the Quadriplegia Index of Function Scale (QIF),27,28_{parameters such as “joint range}

of motion”, or tasks such as “Picking up wooden pegs and dropping them in a box” from

the Grasp Release Test (GRT).29

Flow chart of the study selection process.

Electronic literature search in MEDLINE, EMBASE, CINAHL

and PsychINFO:

2881

Studies retrieved after abstract and title check:

1046

Studies included (step 1) after full article check:

894

Five most frequently used outcome measures included

(step 2) for analysis:

17

Studies excluded on title and abstract check:

1835

Studies excluded on full article check:

(29)

After having identified the outcome measures, we searched for articles in which investigators examined the reliability and responsiveness of these measures in the populations in which they had been used. The number of patients included in the psychometric study, their health condition, the method applied to study the reliability or responsiveness, the corresponding results, and references were extracted from the identified investigations. Validations of cultural adaptations or translations of the selected outcome measures were not considered in the psychometric properties search. Qualitative studies of the outcome measures of interest performed on subjects with another health condition, from the general population, or with adolescents or children were not included.

Linking to the ICF

Step 3 was linkage of the information contained in the outcome measures. In this step, each item of the patient-reported outcome measures and each item, aim of each task, or aim of the clinical outcome measure was extracted and linked to the ICF by 2 independent

investigators according to a set of linking rules.23,24_{An item could be linked to one or more}

ICF categories, depending on the number of concepts contained in that item.30_{If specific}

information could not be linked to the ICF, this was documented and classified in 2 ways. First, if the information was not sufficiently specified to make a decision as to which ICF category or categories should be selected, the option “not definable” was chosen (linking rule 9). For example, the item “My health is excellent” found in the Short Form-36 Health

Survey Questionnaire (SF-36)31,32_{was considered “not definable” for linking. Second, if the}

information was not represented in the ICF, the option “not covered” was chosen (linking rule 10). For example, the item “How satisfied are you with your HEALTH NOW” of the

Arthritis Impact Measurement Scale (AIMS II)33,34_{was considered to be “not covered” by}

the ICF. If the information referred to a determined diagnosis or disease, “health condition” was used. Personal factors are not yet classified in the ICF. However, when information was considered to address personal factors per definition in the ICF, “personal factor” was used. For example, the item “I seem to get sick a little easier than other people” of the SF-36 was considered a personal factor.

Consensus between the 2 investigators was reached to decide which ICF categories should be linked to the different items or aims. To resolve disagreements between the 2 investigators, a third person trained in the linking rules was consulted. In a discussion led by the third person, the 2 investigators who linked the outcome measures stated their pros and cons for the linking of the information by taking a specific ICF category

(30)

into consideration. The third person made an informed decision on the basis of these statements. The application of the predefined linking rules has been shown to yield high

agreement between raters (i.e., 91% at the second level of the classification).23

Quality assurance

In the abstract checking phase, one investigator reviewed all abstracts for eligibility. Approximately 70% of abstracts were screened by another investigator. In case of disagreement, the 2 investigators discussed the reasons for inclusion or exclusion of a study. All included articles were examined by one investigator for outcome measure extraction. The linking of the outcome measures selected for further analyses was performed by 2 investigators. Finally, the search of the literature to find the psychometric studies of the selected outcome measures and the corresponding data extraction was performed by one investigator.

Analyses

Descriptive statistics were used to document the most frequently used outcome measures

(Table 2.1)35-49_{in the 4 different populations. Descriptive statistics also were used to analyze}

the areas of functioning and disability (i.e., ICF categories) in the most frequently used patient-reported and clinical outcome measures. In addition, the frequency with which an ICF category was being used in the measures was documented.

The degree of agreement between the 2 investigators at the first, second, and third

ICF levels was calculated by means of the K statistic and bootstrapped intervals.50,51_These

analyses were performed with SAS for Windows V 9.1 (SAS Institute, Cary, NC).

Results

In step 1, the electronic literature searches in MEDLINE, CINAHL, PsycINFO, and EMBASE yielded 2881 hits. One thousand forty-six studies were included after the abstracts were checked for eligibility. The 2 investigators who together checked approximately 70% of the abstracts (69.15%; 2881/100*69.15 = 1992) agreed on 1746 of them (87.65%). Of the 2881 studies identified, 894 studies contained a reference or information on the psychometric properties of at least one of the outcome measures used and were definitely included. Figure 2.2 provides an overview of the selection process.

In step 2, the 5 most frequently used outcome measures in each of the study populations were determined, which resulted in a total of 17 outcome measures.

(31)

T

able 2.1

Overview of the 17 most frequently used outcome measures on upper extremity function in the dif

ferent populations studied and

the frequency

with which they were used in those populations Outcome measures

Tetraplegia Rheumatologic diseases Peripheral upper extremity conditions Stroke

Clinical outcome measures

Modified

Ashworth Scale (MAS)

44, 45 16 1 Action Research Arm Test (ARA T) 39 61 Motor

Activity Log (MAL)

46

52

W

olf Motor Function

Test (WMFT)

47

1

40

Functional Independence Measure (FIM)

36, 37

2

40

Jebsen Hand Function

Test (JHFT) 48, 49 13 17 22 Grasp-Release T est (GR T) 29 4

Quadriplegia Index of Function (QIF)

27, 28

3

V

an Lieshout

Test Short Form (VL

T SF) 42, 43 3 Fugl-Meyer Assessment (FMA) 40 1 97 Assessment of Strength 35 6 57 46 42

Assessment of Range of Motion

35

21

51

0

9

Patient-reported outcome measures

Short Form 36 Health Survey Questionnaire (SF36)

31, 32

92

4

7

Health

Assessment Questionnaire (HAQ)

26

63

2

1

Disability of the Shoulder

, Arm and Hand Questionnaire (DASH)

38

22

64

1

Severity of Symptoms and Functional Status of the Boston Carpal

T unnel Questionnaire (BCTQ) 41 12 7

Arthritis Impact Measurement Scale II (AIMSII)

33, 34

31

2

1

Numbers in columns indicate the frequency of the outcome measure used in the respective population; blank spaces indicate no en

(32)

Table 2.1 presents the 17 outcome measures and the frequency with which they were used in the different populations. Five of these outcome measures were patient-reported outcome measures and 12 were clinical outcome measures.

Forty-four publications were identified that included information about the reliability and responsiveness of 15 of the 17 identified outcome measures. Table 2.2 presents the populations for which reliability and responsiveness studies for those outcome measures have been reported, the number of patients included in the studies, the method applied to

study the reliability or responsiveness, and the corresponding results and references.52-87

For 2 clinical outcome measures (assessment of muscle strength and assessment of joint range of motion), we did not provide information on reliability and responsiveness in Table 2.2. Various devices are available to measure strength (e.g., the dynamometer, the vigorimeter, or the microFET [The Trigenics Institute of Functional Neurology, Toronto, Canada]) and joint range of motion (e.g., the goniometer or the inclinometer), and their assessment corresponds to an objective measurement. The complexity of the resulting psychometric data with different populations and different experimental settings could not

be integrated in the analysis of the quality of outcome measures.35

The results of step 3 are presented in Tables 2.3–2.5, which show the coverage of ICF categories for the components Body Functions and Structures, Activities and Participation, and Environmental Factors, respectively, by the selected outcome measures. The tables display the linkage results at all levels of the ICF hierarchy, including the frequency with which the ICF categories were covered in the outcome measures. The first column represents the list of ICF categories (first, second, third, and fourth level) addressed in at least one of the measures, whereas the following columns represent the outcome measures. The numbers in each of the columns indicate which of the ICF categories were represented and how often the category was used in the outcome measure.

The outcome measures cover 33 ICF categories of the component Body Function. Eleven outcome measures refer to Chapter b1, Mental Functions; 6 refer to Chapter b2, Sensory Functions and Pain; 3 refer to Chapter b5, Functions of the Digestive, Metabolic, and Endocrine Systems; 1 refers to Chapter b6, Genitourinary and Reproductive Functions; and 12 refer to Chapter b7, Neuromusculoskeletal and Movement-Related Functions.

Two outcome measures cover 8 ICF categories of the component Body Structure, and they belong to Chapter s7, Structures Related to Movement. Fourteen of the 17 outcome measures cover 96 ICF categories of the component Activities and Participation. All ICF chapters of this ICF component are represented.

(33)

T

able 2.2

The interrater and test-retest reliability

, internal consistency and responsiveness of the most frequently used outcome measur

es of upper extremity

function in the dif

ferent populations Outcome measures Health condition Sample size Interrater reliability Test-retest reliability Internal consistency Respon- siveness First author , year , reference no.

Clinical outcome measures

Modified Ashworth Scale

Stroke 36 ± 1 Blackburn, 2002 52 Stroke 9 ± to + 1 Brashear , 2002 53 Stroke 35 ± to ++ 2 Gregson, 2000 54 Stroke 18 ++ 1 Bodin, 1991 55

Peripheral upper extremity conditions

NA

Action Research Arm T

est Stroke 40 ++ 4 ++ Nijland, 2010 56 Stroke 33 ± 7 Beebe, 2009 57 Stroke 20 ++ 4 ++ 3 Lyle, 1981 39 Motor Activity Log Stroke 30 ± 7 to + 7,8 Hammer , 2010 58 Stroke 41 ± 4 + 5 ++ Uswatte, 2005 59 W

olf Motor Function

Test Stroke 40 ++ 4 Nijland, 2010 56 Stroke 24 ++ 4 ++ 5 ++ Morris, 2001 60 Rheumatologic diseases NA

Functional Independence Measure

Stroke 163 ± to + 7 Schepers, 2006 61 Stroke 25 ++ 4 Fricke, 1993 62 Tetraplegia 57 ± to ++ 5 Segal, 1993 63

Jebsen Hand Function T

est Stroke 33 ± 7 Beebe, 2009 57 Rheumatologic diseases 50 ++ 5 Vliet Vlieland, 1996 64

26 + to ++ 5 Jebsen, 1969 48 Grasp-Release Test Tetraplegia 60 - to ± 7 & - to + 8 Spooren, 2006 43 Tetraplegia 19 ++ 4 Mulcahey , 2003 65 T

(34)

able 2.2 Continued Outcome measures Health condition Sample size Interrater reliability Test-retest reliability Internal consistency Respon- siveness First author , year , reference no.

Quadriplegia Index of Function

Tetraplegia 60 ± to + 7,8 Spooren, 2006 43 Tetraplegia 30 + to ++ 5 Gresham, 1986 28 Tetraplegia 18 + to ++ 5 Labi, 1981 66 V an Lieshout Test Short Form Tetraplegia 60 - to + 7 & ± to + 8 Spooren, 2006 43 Tetraplegia 12 ++ 5 ++ Post, 2006 42 Fugl-Meyer Assessment Stroke 377 ++ 4 W oodbury , 2008 67 Stroke 12 ++ 4 Sanford, 1993 68 Stroke 19 ++ 5 Duncan, 1983 69 Rheumatologic diseases NA

Patient-reported outcome measures Short Form 36 Health Survey Questionnaire

Stroke 188 + to ++ -7 Almborg, 2009 70 Stroke 124 ± to + -8 Hagen, 2003 71 Stroke 1128 - to + 2 ± to + Dorman, 1998 72 Stroke 90 + Anderson, 1996 73 Rheumatologic diseases 168 + Leung, 2010 74 Rheumatologic diseases 1552 + to ++ Kvien, 1998 75 Rheumatologic diseases 11 3 + + Husted, 1997 76

99 ++ 4 - to + 8 Beaton, 1998 77

Health Assessment Questionnaire

Rheumatological diseases 11 0 + + 5 ++ Lautenschläger , 1997 78 Rheumatological diseases 20 ± to ++ 3 Fries, 1980 26

NA

Stroke

NA

(35)

Disability of the Shoulder

, Arm

and

Hand Questionnaire

32 ++ -7 Hobby , 2005 79

57 + 5 + 8 Greenslade, 2004 80

109 ++ ± to + 7,8 Gummesson, 2003 81

34 ± to + 7,8 Gay , 2003 82

68

++

4

Beaton, 2001

83

50 + 2 to ++ 5 ++ V eehof, 2002 84 Rheumatologic diseases 106 ++ -7 Christie, 2009 85 Stroke NA

Severity of Symptoms and Functional Status of the Boston Carpal T

unnel

Questionnaire

57 + to ++ 5 ± to + 8 Greenslade, 2004 80

34 + 7,8 Gay , 2003 82

102 + 5 ++ + 7,8 Atroshi, 1998 86

67 ++ 5 ++ + 7 Levine, 1993 41 Rheumatologic diseases NA

Arthritis Impact Measurement Scale II

Rheumatologic diseases 25 ++ 4 - to ± 7 Goossens, 2000 87 Rheumatologic diseases 104 + to ++ Meenan, 1980 33

NA

Stroke

NA

Reliability (Correlation, Kappa, Cronbach's alpha): -- indicates poor; -, fair; ±, moderate; +, good; ++, very good;

1 Kendall's T au; 2 Kappa; 3 Spearman correlation; 4 Intraclass correlation coef ficient (ICC); 5 Pearson correlation.

Responsiveness: - indicates small; ± moderate; +, large;

7 Ef

fect size (ES);

8 Standardized response mean (SRM).

Blank field indicates no information found. NA

(36)

able 2.3

The frequency of the number of dif

ferent second, third, and fourth ICF categories for the component Body Functions and Body St

ructures represented

in the examined outcome measures on upper extremity function Body Functions and Body Structures

Patient-reported outcome measures

Clinical outcome measures

ICF category DASH HAQ SF-36 BCTQ AIMSII ARA T FIM G R T JHFT MAL MAS Q IF V LT WMFT F M A

Assessment of range of motion Assessment of strength b1 CHAPTER 1 MENT AL FUNCTIONS b1 14 Orientation functions 1 b1265 Optimism 2 b1266 Confidence 1 b134 Sleep functions 1 b1342 Maintenance of sleep 2 b144 Memory functions 1 b147 Psychomotor functions 2 b152 Emotional functions 9 16

b16710 Expression of spoken language

1 b1671 1 Expression of written language 1

b16712 Expression of sign language

1 b2 CHAPTER 2 SENSOR Y FUNCTIONS AND P AIN b260 Proprioceptive function 1 b265 T ouch function 3 6 1

b270 Sensory functions related totemperature and other stimuli

36 1 b280 Sensation of pain 1 2 1 6

b28014 Pain in upper limb

8 4 b28016 Pain in joints 4 4 4

(37)

b5 CHAPTER 5 FUNCTIONS OF THE DIGESTIVE, MET

ABOLIC

AND ENDOCRINE SYSTEMS

b5102 Chewing 1 b5105 Swallowing 1 b5253 Faecal continence 1 b6 CHAPTER 6 GENIT OURINAR Y

AND REPRODUCTIVE FUNCTIONS b6202 Urinary continence

1 b7 CHAPTER 7 NEUROMUSCULOSKELET AL AND MOVEMENT - RELA TED FUNCTIONS 12

b710 Mobility of joint functions

1

b7101 Mobility of several joints

5

12

17

7

21

b7151 Stability of several joints

2

b730 Muscle power functions

1

b7300 Power of isolated muscles and muscle groups

32

4

b7350

Tone of isolated muscles and

muscle groups

5

b7502 Reflexes generated by other exteroceptive stimuli

4

b760 Control of voluntary movement functions

1

b7602 Coordination of voluntary movements

1

b7603 Supportive functions of arm or leg

1

b7800 Sensation of muscle stif

fness

1

T

(38)

able 2.3

Continued

Body Functions and Body Structures

Assessment of range of motion Assessment of strength s7 STRUCTURES RELA TED T O MOVEMENT

s720 Structure of shoulder region

4

1

s730 Structure of upper extremity

4

s73001 Elbow joint

1

s73002 Muscles of upper arm

2 s7301 Structure of forearm 1 s7301 1 W rist joint 1 s7302 Structure of hand 4 1 s73022 Muscles of hand 1

spaces indicate no entry in this field.

Arthritis Impact Measurement Scale II;

ARA

T

=

Action Research

Arm

Test; BCTQ = Boston Carpal

T

unnel Questionnaire; DA

SH = Disability of the Shoulder

, Arm and Hand

= Fugl-Meyer

Assessment; GR

T

= Grasp-Release

Test; HAQ = Health

Asses

sment Questionnaire; ICF = International

, and Health; JHFT

= Jebsen Hand Function

Test; MAL

= Motor

Activity Log; MAS = Modifi

ed

Ashworth Scale; QIF = Quadriplegia Index of

T

= V

an Lieshout

Test; WMFT

= W

olf Motor Function

(39)

T

able 2.4

ferent second, third, and fourth ICF categories in the component

Activities and Participatio

n represented in the

examined outcome measures on upper extremity function Activities and Participation

ICF category DASH HAQ SF-36 BCTQ AIMSII A R A T F IM GR T JHFT MAL MAS Q IF V LT WMFT F M A

Assessment of range of motion Assessment of strength d1 CHAPTER 1 LEARNING AND APPL YING KNOWLEDGE d155 Acquiring skills 1 d166 Reading 1 d170 W riting 1 1 1 2 1 1 d175 Solving problems 1 d2 CHAPTER 2 GENERAL T ASKS AND DEMANDS

d2200 Carrying out multiple tasks

2

d230 Carrying out daily routine

1

2

d3 CHAPTER 3 COMMUNICA

TION

d310 Communicating with-receiving- spoken messages

1

d315 Communicating with-receiving- nonverbal messages

1

d3601 Using writing machines

1

d4 CHAPTER 4 MOBILITY

1

4

d410 Changing basic body position

2 1 d4100 L ying down 1 1 1 d4102 Kneeling 1 d4103 Sitting 1 2 d4104 Standing 2 d4105 Bending 1 1 4 T

(40)

able 2.4

Continued

Activities and Participation

Assessment of range of motion Assessment of strength

d4153 Maintaining a sitting position

1

d4154 Maintaining a standing position

1

d4200

T

ransferring oneself while

sitting 1 6 1 d4201 T

ransferring oneself while

lying

13

d430 Lifting and carrying objects

1 1 d4300 Lifting 1 2 3 2 1 3 1

d4301 Carrying in the hands

1

2

d4302 Carrying in the arms d4305 Putting down objects

1

d440 Fine hand use

7 2 1 1 2 2 6 d4400 Picking up 2 1 2 1 2 d4401 Grasping 1 3 6 1 2 4 5 d4402 Manipulating 1 1 6 2 2 1 1 3 d4403 Releasing 2 1

d445 Hand and arm use

10 1 5 d4450 Pulling 1 d4451 Pushing 1 1 3 d4452 Reaching 1 1 1 1 1 d4453 T

urning or twisting the

hands or arms 33 1 1 1 1 2 1

(41)

Systematic review of upper extremity function d450 W alking 1 4 d4500 W

alking short distances

1

d4501 W

alking long distances

2 1 d4551 Climbing 1 2 5 2 d4552 Running 1 1

d4600 Moving around within the home

1

d4601 Moving around within buildings other than home

1

d4602 Moving around outside the home and other buildings

12

d465 Moving around using equipment

16 1 d470 Using transportation 1 1

d4702 Using public motorized transportation

1

d475 Driving

1

d4751 Driving motorized vehicles

1 d5 CHAPTER 5 SELF-CARE 2 3 d510 W ashing oneself 5 d5100 W

ashing body parts

2

1

2

4

d5101 W

ashing whole body

2 1 1 4 d5102 Drying oneself 1 1 1 4

d5200 Caring for skin

1

d5201 Caring for teeth

1

d5202 Caring for hair

5 2 2 3 d530 Toileting 1 1 2 d5300 Regulating urination 1 d5301 Regulating defecation 1 d5302 Menstrual care 1 T

(42)

able 2.4

Continued

Activities and Participation

Assessment of range of motion Assessment of strength d540 Dressing 1 1 1 1 2 1 d5400 Putting on clothes 1 1 1 2 1 3 d5401 Taking of f clothes 1 1 1 3 d5402 Putting on footwear 1 2 d5403 Taking of f footwear 2 d550 Eating 1 2 4 1 1 4 d560 Drinking 2 1 1 2 2 1

d6 CHAPTER 6 DOMESTIC LIFE

1

d620

Acquisition of goods and

services 24 d6200 Shopping 1 d630 Preparing meals 1 4 1

d6300 Preparing simple meals

1 d640 Doing housework 2 1 9 1 d6400 W

ashing and drying

clothes and garments

1

d6402 Cleaning living area

2

1

d6403 Using household appliances

1

d6505

Taking care of plants,

indoors and outdoors

11

d7 CHAPTER 7 INTERPERSONAL INTERACTIONS AND RELA

TIONSHIPS

1

d750 Informal social relationships

1

(43)

d7500 Informal relationships with friends

11

1

d7501 Informal relationships with neighbours

11 d760 Family relationships 1 1 d7702 Sexual relationships 1

d8 CHAPTER 8 MAJOR LIFE AREAS

1 d820 School education 2 d850 Remunerative employement 6 11 d855 Non-remunerative employment 1 d9 CHAPTER 9 COMMUNITY , SOCIAL

AND CIVIC LIFE

1

3

d910 Community life

1

d920 Recreation and leisure

3 d9200 Play 1 d9201 Sports 6 2 1 d9202

Arts and culture

1 d9203 Crafts 2 1 d9204 Hobbies 1 d9205 Socializing 1 6

Numbers indicate the frequency of the ICF category covered by the respective outcome measure on upper extremity function; blank

AIMS II =

ARA

T

=

Action Research

Arm

T

, Arm and Hand

Questionnaire; FIM = Functional Independence Measure; FMA

= Fugl-Meyer

Assessment; GR

T

= Grasp-Release

Test; HAQ = Health

Asses

Classification of Functioning, Disability

, and Health; JHFT

Test; MAL

= Motor

ed

Function; SF-36 = Short Form-36 Health Survey Questionnaire; VL

T

= V

an Lieshout

Test; WMFT

= W

olf Motor Function

(44)

able 2.5

ferent second, third, and fourth categories in the component Environmental Factors represent

ed in the examined

outcome measures on upper-extremity function Environmental Factors

Assessment of range of motion Assessment of strength e1 CHAPTER 1 PRODUCTS AND TECHNOLOGY 2 e1 101 Drugs 2 2 e1 151

Assistive products and

technology for personal use in

daily living 8 5 e1201

Assistive products and

technology for personal indoor and outdoor mobility and transportation

4

3

e1250 General products and technology for communication

1

e1650 Financial assets

1 e3 CHAPTER 3 SUPPOR T AND RELA TIONSHIPS 2

e310 Immediate family

9

e315 Extended family

9

e320

Friends

3

e355 Health professionals

(45)

e4 CHAPTER 4

A

TTITUDES

e410 Individual attitudes of immediate family members

1

e415 Individual attitudes of extended family members

1

e420 Individual attitudes of friends

1

AIMS II =

ARA

T

=

Action Research

Arm

T

, Arm and Hand

= Fugl-Meyer

Assessment; GR

T

= Grasp-Release

Test; HAQ = Health

Asses

, and Health; JHFT

Test; MAL

= Motor

ed

T

= V

an Lieshout

Test; WMFT

= W

olf Motor Function

Test.

T

able 2.6

The frequency of items not linked to the International Classification of Functioning, Disability and Health (ICF)

DASH HAQ SF-36 BCTQ AIMSII A R A T F IM GR T JHFT MAL MAS QIF V LT WMFT F M A

Assessment of range of motion Assessment of strength NC 2 2 1 ND 4 1 15 7 1 4 H C 3 3 4 PF 1 2 12

AIMS II =

ARA

T

=

Action Research

Arm

T

, Arm and Hand

= Fugl-Meyer

Assessment; GR

T

= Grasp-Release

Test; HAQ = Health

Asses

, and Health; JHFT

Test; MAL

= Motor

ed

T

= V

an Lieshout

Test; WMFT

= W

olf Motor Function

Test, NC = no

t covered; ND = not defined; PF = personal

(46)

The number of ICF categories from the different chapters represented in the outcome measures ranged from 39 in Chapter 4, Mobility, to 2 in Chapter d2, General Tasks and Demands.

Fourteen ICF categories of the component Environmental Factors are covered in 3 of the 17 outcome measures. Six belong to Chapter e1, Products and Technology, 5 belong to Chapter e3, Support and Relationships; and 3 belong to Chapter e4, Attitudes.

Three outcome measures had content that was considered not covered in the ICF.

These measures were the AIMS II, Functional Independence Measure (FIM),36,37_{and QIF.}

Six outcome measures had content considered not sufficiently specified to be assigned to a specific ICF category. These measures were Disability of the Shoulder, Arm and Hand

Questionnaire (DASH),38_{HAQ, SF-36, AIMS II, Action Research Arm Test (ARAT),}38_{and the}

Fugl-Meyer Assessment (FMA).40_{Three outcome measures addressed personal factors.}

These measures were the DASH, SF-36, and AIMS II. Two outcome measures cover 2 health conditions, and they were the Severity of Symptoms and Functional Status of the Boston

Carpal Tunnel Questionnaire (BCTQ)41_{and AIMS II. This information is shown in Table 2.6.}

The K statistic (with bootstrapped confidence intervals) was 0.52 (0.48–0.55) at the first level, 0.47 (0.44–0.50) at the second level, and 0.45 (0.41–0.48) at the third level of the classification. No confidence interval includes the value zero, which indicates that the level of agreement is beyond chance.

Discussion

This literature review provides an overview of outcome measures used to address functioning and disability in persons with impairment in upper extremity function. Moreover, it presents an overview of the content addressed in these outcome measures when the ICF is used as a reference. It was possible to identify outcome measures from a comprehensive perspective rather than from just one specific patient population. We also present information on the reliability and responsiveness of the outcome measures and the populations in which these psychometric properties were studied. Thus this investigation provides clinicians and researchers with a guide for selecting the most appropriate outcome measure for their clinical population or research question, taking ICF-based content validity (“what do the outcome measures address?”), reliability, and responsiveness into consideration.

Patient-reported outcome measures for the upper extremities are most frequently used in rheumatologic diseases and peripheral upper extremity-specific conditions,